What is Open Humans to me?

I’m Steph, I’ve just started as a software developer at Open Humans, and in this post I want to describe what the organisation means to me.

I feel like the value of Open Humans can be split into three main categories, perhaps of increasing fuzziness in terms of concrete assets, but also, in my opinion, of increasing importance and rarity. Open Humans is a technological platform; it’s a vibrant community; and it’s a paradigm shift.

At its very core, Open Humans is a technological platform.People are increasingly finding themselves in possession of their own personal data. Whether this be from fitness tracking devices; commercial genome sequencing services; or internet search history, we are, somewhat inadvertently, gathering more and more data about ourselves.

Fig1: people are gathering data about themselves

The Open Humans platform allows members to upload and store these data privately, to choose whether to share some publicly, and to use their data to contribute to research projects and learn more about themselves.

Fig2: people can upload their data easily using data tools

For researchers and citizen scientists, the platform enables painless and efficient data collection from engaged research participants. It is a seamless pipeline for human subjects research, which puts the individual participants in charge of how their data is used, avoiding a one-size-fits-all ethics approach which is common in traditional research protocols.

Fig3: data can be used to further human subjects research

Open Humans is defined by its vibrant community. In recent years there has been a sharp rise in production and use of personal tracking systems: wearable devices; smart scales; lifestyle logging apps (including diet, exercise, and sleep); and commercial genetic and ancestry tools. People are intrigued by their own data. For this reason, there is no single user profile: we are researchers; patients; data scientists; citizen scientists; any and all people who want to learn more about themselves. The Open Humans community have written 19 data transfer tools enabling data from external projects to be added to Open Humans by users at the touch of a button. They have contributed 9 projects to the site, where research can be done on participants’ shared data. And they have continued to be enthusiastic, motivated, and truly engaged in the work of the organisation.

Open Humans is a paradigm shift: a totally new way to do humans subjects research. For me this is the most exciting way to look at Open Humans. Personal data can be sensitive: sharing can cause embarrassment, expose health concerns leading to discrimination, or lead to identity theft. Historically in the medical world, this has been handled by keeping health and human subjects research data anonymous. However as data becomes richer and more descriptive (for example, a genome, or internet search history), it is becoming easier to identify the original subject. So now we have more data than ever, and keeping it private when using it in research is becoming harder than ever.

Fig4: the traditional human subjects research pipeline: data is handed over to scientists and generally not returned, subjects do not learn about the results and don’t get a say in how they are shared

Open Humans turns the traditional research pipeline on its head. It puts individual subjects at the centre of the sharing process, and in full control of how their own data is used in research. People are unique, and each will have their own reasons for wanting to keep some data private. These diverse sharing preferences call for a new system for human subjects research, that focuses on the subjects themselves, and meets their own personal privacy requirements.

Fig5: the Open Humans research pipeline: participants have autonomy over their data and can choose which studies they share their data with

Giving research subjects the autonomy they deserve and at the same time increasing the efficiency of the research pipeline seems like a great idea, but the project is ambitious. Large scale open projects do have the ability to change the world (think Wikipedia), but changing the status quo in a system that has been around for a long time will always come with a lot of friction. However the vast amount of data being generated these days means that we are in new territory. This is a great time for change. Making sure that people are empowered to make their own decisions about how their data is used is an important endeavor. Working closely with our community, we hope to reach a critical mass of membership such that personal data sharing in this way becomes the standard approach. I am excited and optimistic about how Open Humans can revolutionise human subjects research, and I’m very grateful to be a part of this exciting movement.